I get that it is hard to fathom my issues with my throat. When you are around me, you hear me breathing heavily. I often get asked if I am alright. If I need help? I don’t need help. I just need a new throat. Lol I often just reply and tell them the truth. I have a small throat and that is why I sound like this. It’s not a pretty sound. It sounds like a wounded animal. Recently a friend whom I love and I know that she has the best intentions keeps pushing me to walk and push myself. I love that she wants me to be healthy. We both are on our own journeys with our different auto-immune issues. I love that she has the support from her spouse. And they both want to aide me on my journey. When she said to me “if you told me about your lungs, it didn’t register.” I realize then that she probably isn’t the only one who cannot fathom my issues. In reality, I have a hard time remembering and understanding my own throat issues.
I’m thankful that I had a pulmonary lung function test done. This test shows my issues and it gives me a voice in explaining my issues to others. A normal throat is 12 to 20 MM. Mine is 4.5. So picture a straw, the kind you drink from. I am showing you one of my straws.
This is the exact size of my trachea that I breathe through daily. Now picture this exact straw bigger by 8 inches. Then picture it bigger by 11 inches. The way the straw is right now is what I breathe through daily. The straw being bigger by 8 or 11 is what you breathe through. The oxygen goes down the trachea tube and it goes into your lungs to inflate and deflate. Since I am breathing through a smaller tube, my lungs don’t have a chance to deflate properly. So I trap oxygen in my lungs. This means my lungs are what they call hyper-inflated. So when the oxygen is inflating my lungs, it is meeting up with the oxygen in my lungs that is getting rid of the oxygen. So they collide and hence why I sound like I do. That is why it is tough for me to walk for a long period of time without issues. I do what I can. I go for walks with my two caregivers and when they are not here I walk to the lobby to use the internet and that raises my heart rate up to aerobic levels. I have understood that one big movement during the day is all I am capable of at this moment. I refuse to be bed ridden or unable to use my legs or arms or to lose my abilities. This means that I move in the manner that I can. It’s not easy. It is quite scary, but sometimes you have to look fear in the face and give it the middle finger.
Will it get better? No. This is how it is going to be for the rest of my life. Am I allowing it to stop me from moving? No. I’m I feeling sorry for myself? No. What I am doing is processing what this is going to look like. I wish I could find a personal trainer with the willingness to take on a challenge as I am, but just like doctors and nurses are scared of me, personal trainers and physical therapist are scared of me too. It hasn’t happen and probably won’t. So I am left on my own. I need someone with the mindset of this is a challenge and won’t be easy or perfect, but I would love to take it on and help this woman. If you know anyone like that, let me know.
Do I want your sympathy? No. What I do want is understanding that I am not like you. That I cannot push myself and improve the way that you can. It is going to take me longer and doing things differently than you. I get it is hard to fathom. It is hard for me to fathom. I struggle all the time with the emotions. I often times feel like a freak of nature. I stress about it. I’m not exactly sure how to handle this emotionally or physical or spiritually. But I’m not closing the door, hiding under the bed, or allowing myself to die a slow and painful death either. So, if you hear me breathing funny, don’t be afraid to ask me. I don’t mind the questions. I do mind the comments or assumptions of if you move more your breathing will get better. Because if Albuterol makes my breathing worse when it is supposed to help, then the same goes from the normal conventional wisdom of moving more. Yes, I know it is unusual , but that is my life.
I wrote this post because God lead me to write it. He told me that I needed to share my struggle and my emotions at the condition I am in. My condition, I had no control over and I didn’t choose nor anything I did, in my past lead me to this illness. Now, if I choose to be a grumpy grump and become bitter then that is my own decision. I’m rely on God to lead me to where I need to be in my illness and my assignments. I’m not quite sure what that looks like, but I know I can trust that I will be okay.